#RareDiseaseDay is a time to raise awareness of the issues facing over 300 million people living with rare diseases worldwide. At Rare Patient Voice, we are committed to bringing the opinions and experiences of patients to the forefront. Today, I’d like to highlight an issue rare disease patients often face. DEI – diversity, equity, and inclusion–is a critical topic these days, especially in the workplace, where all people deserve a level playing field. Sadly, rare disease patients who experience both visible and invisible disabilities are often left out of the DEI conversation. This must change!
As I note in an article I contributed recently to RARE Revolution Magazine, it’s the right of people affected by disabilities to ask for and receive appropriate accommodations which will allow them an equal opportunity to enjoy the benefits of employment. For people with rare and chronic diseases, accommodations that may make an equitable working environment, salary, and benefits a reality can make a tremendous difference in their lives and the lives of their families.
For a link to the article, please see below. I hope you’ll join me in showing support for our rare community, today and everyday!
—Pam Cusick, Senior Vice President, Rare Patient Voice